When you walk out of an appointment baffled yet optimistic. I know that does not seem like it goes together. But in this case it does. Gracelyn’s primary care doctor is conserned with the on going symptoms. Yet her Nerologist wants to say none of it is related to her Very Rare Brain disorder called Schizencephaly.
Primary is suggesting that we see Sleep clinic, to see if the source of the fatigue and sleeping issues. I am going to address the random breathing at night. The change of body temp when sleeping. How some nights she can’t lay flat without breathing issues. She has also had to keep her head propped up to sleep and not have breathing issues. The mistory of sleep is hard.
I still have questions why Gracelyn’s body temp changes so much. As she has gotten older her core body temp has dropped. My mommy gut says that we need to be careful with this. But I feel that everyone around me thinks I am losing my mind.
Many questions make my mind spin. It makes me cry out in the corner of the my little world. Many time not letting people see the pain. I feel that even with God walking beside me I can stop struggling on the current things changing in my girl. 
